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March 6, 2009

A Mother's Take

The past few hours have tested my optimism. I can't even put into words what it feels like to hear that it's likely your child's life is more than half over--at only 14 months old.

I am in a dream that has morphed into a nightmare. I was given a beautiful, adorable baby boy--even when he was still inside of me I loved him more than I thought it was possible to love anything. And now, I have to watch him suffer and die? I can't believe it is true, yet. I won't.

"Ultra-orphan disease" is a four-letter word in my book. But... I am not going to dwell on it.

I am working toward clearing (or obliterating) my schedule. I had been trying to get out, work, make new friends, but screw new friends. I don't need them. Bertrand's my BFF. We'll be hanging out doing cool stuff together every day. :) Anyone who wants to tag along is welcome.

We're putting a baby bucket list together which B and I will attack. (I am taking suggestions for the list so please email me some!) Bertrand is going to have the best next ~21 months that any baby has ever had! He'll have more books, trips to the farm & zoo, horseback riding, maybe even some sailing! ;)

By the way, I don't care how well meaning, please don't mention us having another child. Not amnio, not adoption, not genetic counseling, not anything. Please don't mention it around me because I am not responsible for what I may do. I don't want another child. I want Bertrand. End of story. So, let's just not go there now. Thanks.

But, speaking of counseling, Matthew and I are going to start seeing a counselor two weeks from now. Counseling comes highly recommended from other parents of special needs children. Now, it seems like we may be facing both the needs of a special child AND his loss. We'll need all the help we can get.

Even expecting all this, we feel so lucky--so happy--to have Bertrand in our lives. We love him.

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The Bertrand Might Research Fund has been established at Sanford Burnham Medical Research Institute, a 501(c)3 charitable organization. Your donation will help Dr. Hudson Freeze’s lab begin to unravel the mystery of N-Glycanase deficiency, and hopefully find a treatment in the near future.

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